Biobank for alopecia research Expand Alopecia UK (AAR-UK at time of donation) funds invested: £20,000 When: March 2017 Project type: Biobank for alopecia research Project Lead: Professor Simon Milling Length of project: 3 years Research Institute: University of Glasgow Condition of interest: Alopecia areata/totalis/universalis (samples also being taken from people without alopecia, for comparison) Funds being used for: Research Nurse to collect biopsies and blood samples for alopecia studies More information about the biobank: AAR-UK set out to establish the first alopecia biobank registry within the UK. To establish this, AAR-UK’s founder Jayne Waddell organised a meeting with Professor Iain McInnes from Glasgow University with a view to finding the best way to proceed for the biobank to be viable. An AAR-UK crowd funding campaign then followed which raised the £20,000 that was required to pay for the clinic to take the samples. Nicola McBride (AAR-UK Research Co-ordinator) worked closely with Simon Milling and Kym Bain from Glasgow University to set up the clinic for the biobank samples. Together with dermatologist Susan Holmes they secured the necessary ethical approval and developed the questionnaires required for the participants to fill in at the clinic with the research nurse. They also put provisions in place to safeguard the samples and ensure that participant’s personal information is protected. The clinic is now up and running and currently runs once a week on a Monday afternoon, usually at the Queen Elizabeth University Hospital in Glasgow. Volunteers from the Glasgow area contact the Research Nurse by e-mail, and an appointment is arranged. At the clinic, the Research Nurse obtains patient consent, completes the questionnaires with participants to get a detailed history, and takes the blood and tissue samples, giving the participant the home kit for stool samples to be handed back into the clinic. The samples are then stored within the biobank at the University of Glasgow. Participants are offered the opportunity to provide blood samples, skin swabs, skin biopsies and stool samples. The biobank was set up in conjunction with Glasgow University student, Kym Bain’s, PhD project which looks at the pathogenesis of alopecia areata and the potential link to intestinal inflammation. Kym's project is funded by Medical Research Scotland and has industry funding from pharmaceutical company, AstraZeneca. The project supervisors are Professor Simon Milling and Professor Iain McInnes (from Glasgow University) and Annika Ȧstrand (from AstraZeneca). Interested scientists can apply for access to samples from the biobank by contacting Professor Milling at the University of Glasgow. Potential participants from the Glasgow area can find more details about the study here. Updates from the Biobank: To date, over 100 volunteers have given samples to the Biobank, which is fantastic. Kym writes regular blog posts for us, to keep us updated on the outcomes of her research project using samples from the Biobank. These are available here: Time for T-cells (November 2018) Making sense of molecules (June 2019) Research Outcomes: Kym has published a paper looking at the immune system in alopecia, available here.
Hair Loss Priority Setting Partnership (COMPLETED) Expand Alopecia UK funds invested: £22,235 When: 2013 Project type: Priority setting Partnership Condition of interest: All types of hair loss Length of Project: 2 years Research question: The aim of a PSP is to identify the unanswered questions about a disorder, in this case hair loss, from the perspective of those with the disorder, their partners/parents/carers and treatment providers, and then prioritise those top 10 questions that participants agree are the most important. Justification for the research project: As a result of our attendance and presentation at the World Congress for Hair Research in 2013 we received a £20,000 donation from the European Hair Research Society. This allowed us to fund a Hair Loss Priority Setting Partnership (PSP) with the James Lind Alliance, the results of which were published in two papers, one in 2017 and the other in 2018. The aim of a PSP is to identify the unanswered questions about a disorder, in this case hair loss, from the perspective of those with the disorder, their partners/parents/carers and treatment providers, and then prioritise those top 10 questions that participants agree are the most important. Who led the project: The PSP was steered by leading UK clinicians and patients, Alopecia UK and the British Hair and Nail Society. A total of 912 people responded to the initial survey, submitting 1,823 questions that were included in the PSP. What were the outcomes? The Hair Loss PSP took two years to complete and after a lengthy process, we ended up with two Top 10 lists (shown below) along with links to pdfs of the published results. Top Ten Priorities for Alopecia Areata (includes totalis, universalis & barbae) What are the causes of alopecia areata? For example, medications, medical problems, lifestyle, vaccinations. Are immunosuppressant therapies (for example, methotrexate, mycophenolate mofetil) better than placebo in the treatment of alopecia areata? In alopecia areata, are biological therapies (including JAK inhibitors and anti-cytokine therapies) more effective than placebo in causing hair re-growth? Are psychological interventions helpful in alopecia areata? Can progression of alopecia areata be prevented by early diagnosis and treatment? Do certain foods, vitamins or nutritional supplements improve hair re-growth in alopecia areata? What can be learnt about alopecia areata from other autoimmune conditions? In whom does alopecia areata hair loss progress and why? Do any treatments have a long-term benefit in alopecia areata? How effective are alternative therapies in alopecia areata? You can see the full write up and how we arrived at this top 10 here. Top Ten Priorities for Hair Loss Disorders (excludes alopecia areata) What is the most effective treatment for frontal fibrosing alopecia? What are the causes of frontal fibrosing alopecia? For example, dietary, genetic, autoimmune, skin care products, medications, hormonal, environmental, vaccination, infection. What are the causes of female pattern hair loss? For example, genetic, hormonal and childbirth, autoimmune, dietary, other medical conditions, environmental factors. In all types of hair loss, are psychological therapies effective in improving patient outcomes? In all types of hair loss, what outcome measures should be used to assess severity of hair loss, progression and impact on the individual? Is spironolactone helpful in managing female pattern hair loss? In all types of hair loss, does raising ferritin levels/replacing iron improve hair growth? And what is the optimal level of ferritin? What is the most effective treatment for Lichen planopilaris? In all types of hair loss, do certain diets or nutritional supplements (for example vitamin D) prevent or improve hair loss? In female pattern hair loss, does hormone replacement therapy (HRT) halt progression of the hair loss compared to placebo? You can see the full write up and how we arrived at this top 10 here. Research funded in response to the PSP: As a result of the issues highlighted in the PSP, three projects have been funded by Alopecia UK, each addressing different priorities from the alopecia areata top 10. Characterising the role of antigen presenting cells in Alopecia Areata (Addressing priority 1) The effectiveness of mindfulness based cognitive group therapy for social anxiety symptoms in people living with Alopecia Areata (Addressing priority 4) Coeliac Disease and Micronutrient Deficiency in Alopecia Areata: Association or Coincidence? (Addressing priority 6)
Early Treatment to prevent Alopecia Areata Progression (E-TAAP) Expand Alopecia UK funds invested: £4350 When: March 2018 Start date: September 2020 Project type: Feasibility work to optimise study design Project Lead: Dr Matthew Harries Length of project: 18 months – 2 years Research Institute: Salford Royal NHS Foundation Trust Condition of interest: Children and adults with first episode patchy scalp alopecia areata (AA) Funds being used for: whole feasibility study including focus groups, statistical support, study team costs, specialist IT support for development of surveys and data management, and printing costs. Research question: Can progression of alopecia areata be prevented by early diagnosis and treatment? Justification for research project: There is no robust evidence that any treatment improves the long-term outcomes in AA. The British Association of Dermatologists guidelines currently recommend conservative management as an option for limited patchy AA. However, further episodes of hair loss are common in AA and progression to more extensive disease (from which spontaneous re-growth is unlikely) is well recognised, particularly in those with more extensive or longstanding alopecia at presentation. This study hypothesises that the early identification and treatment of AA at first presentation will increase hair regrowth rates and reduce the risk of relapse and disease progression in the longer term. This pilot work will help inform study design and strengthen a bid for a larger, prospective, multi-centre RCT in AA. If early treatment does improve longer term outcomes this will lead to a paradigm shift in AA management in the UK, with early effective therapy being instituted in primary care and reducing onward referrals to secondary care. Lower numbers of patients progressing to extensive alopecia areata will not only reduce the overall psychological impact of the disease, but will lower treatment costs and diminish wig provision requirements, with significant cost benefit to the NHS. Who is leading the project: The project is being run by Dr Matthew Harries who is a Consultant Dermatologist and Honorary Senior Lecturer in Manchester. The majority of his research experience has been with translational hair loss clinical studies during his PhD (awarded in 2011) and in various studies since. Dr Harries was the co-champion and clinical lead for the hair loss and alopecia areata priority setting partnerships (PSP) run in conjunction with the James Lind Alliance and Alopecia UK. He runs a regional specialist hair loss service with a large AA cohort. Dr Harries will be working alongside a team of people including clinicians, researchers and patient representatives.
The application of ‘Nanokicking’ in immune disorders Expand Alopecia UK funds invested: £10,500 Further Alopecia UK funds committed: £3000 for Year 3 When: December 2017 Project type: PhD Studentship Project Lead: Teontor Simakou Length of project: 3 years Research Institute: University of the West of Scotland (UWS) Condition of interest: Alopecia Areata Funds being used for: Consumables costs for cell culture, nanokicking experiments, PCR and screening of serum and faecal samples for autoimmune factors. Overall Aim of the Project: To treat alopecia areata using a non-chemical technology based on nanovibrations (Nanokicking) Justification for research project: UWS propose that in the future stem cell therapies will be key in developing regenerative therapies for many conditions, including those affecting the immune response. This project will study the application of nanoscale mechanical stimulation protocols, called ‘Nanokicking’ to manipulate the differentiation of cells that have immune function, thus impacting on the resolution of different immune conditions, such as autoimmune disorders, immunodeficiency and vaccine development. ‘Nanokicking’ has already been successful in the targeted differentiation of Mesenchymal Stem Cells (MSCs) to bone and shows huge potential for bone regeneration and bone disorders. UWS have data to suggest it can play a role in other tissue type development. In addition to providing insight into the immunological mechanisms underpinning human disease, the technology has the potential to provide in vitro models which could be exploited commercially. Who is leading the project: The project is being run by research student, Teontor Simakou, who is working as part of an interdisciplinary team of enthusiastic scientists, experts in biology and physics. Teontor has a good knowledge of immunology, immunoassays and molecular biology. Teontor’s ambition is to learn how physics can boost biological applications and have a positive impact on global healthcare. Updates on the project: Visit our Blogs section to read Ted's views on alopecia research. Research outcomes: Ted has published a review of alopecia, available here.
Characterising the role of antigen presenting cells in alopecia areata Expand Alopecia UK funds invested: £9,925 When: October 2019 Project type: Research Project Lead: Dr Kevin McElwee & Dr Andrei Mardaryev Length of project: 12 months Research Institute: Centre for Skin Sciences, University of Bradford Condition of interest: Alopecia Areata Funds being used for: Research Assistant (staff costs), laboratory supplies, tissue biopsies. Research question: Do Antigen presenting cells (APCs) play a significant role in the development of Alopecia Areata? Justification for research project: Alopecia areata (AA) is an autoimmune hair loss condition that affects men, women and children. It is caused by inflammatory lymphocyte cells inappropriately targeting hair follicles and disrupting their ability to grow hair. What stimulates the lymphocyte cells and promotes the inflammation is not clear, but the group believe that “antigen presenting cells” (APCs) are a key part of the mechanism that induces the start of AA. Prior research shows that APCs in patients with AA have higher levels of cell receptors that would make them better able to stimulate lymphocytes. In a disease model, the group have shown that it was possible to block signalling from APCs, which prevented AA onset. Who is leading the project: The project will be managed by Dr Andrei Mardaryev. Dr Mardaryev lectures in Stem Cell Biology and Regenerative Medicine at the Centre for Skin Sciences (Bradford). Currently, his major research focuses are: delineating the role of epigenetic factors in the regulation of epidermal regeneration and hair follicle growth. Dr Mardaryev will be working alongside a team of researchers, based at the University of Bradford, as well as other research laboratories and clinical groups. The project will also benefit from the support of Professor Kevin McElwee. Professor McElwee has been studying inflammatory hair loss including alopecia areata, scarring alopecia and hormone-related hair loss (pattern baldness) since 1996. His research attempts to understand how the hair follicles develop and interact with the skin and the immune system. Outcomes: Professor McElwee has recently published a review of alopecia areata, which you can find here.
Coeliac Disease and Micronutrient Deficiency in Alopecia Areata: Association or Coincidence? Expand Alopecia UK funds invested: £10,000 When: October 2019 Project type: Clinical Research Project Lead: Dr Amr Salam Length of project: 12 months Research Institute: St John’s Institute of Dermatology, Guy’s and St Thomas’ NHS Foundation Trust Condition of interest: Alopecia Areata, Coeliac Disease Funds being used for: Administrative support and a statistician (Staffing costs) Research question: Does an association exist between coeliac disease (CD) and alopecia areata (AA), and if so, is there sufficient evidence to suggest that a gluten-free diet could stimulate hair regrowth in some patients? Furthermore, do such patients experience micronutrient deficiency due to malabsorption secondary to CD? Justification for research project: An association between alopecia areata (AA) and coeliac disease (CD) was first reported in 1995, and since then, although genetic similarities have been identified, a clinical association between these conditions remains undetermined. Furthermore, there is a lack of data studying the impact of CD on micronutrient malabsorption and subsequent effects on the hair cycle. This retrospective study will look at the medical notes of all paediatric patients diagnosed with alopecia areata, totalis or universalis presenting to our tertiary hair clinic over the last 20 years. In order to to determine the prevalence of associated AA and CD in the study population, Dr Salam will determine whether a diagnosis of CD was confirmed on endoscopy, a gluten free diet was established, the impact of gluten free diet on hair regrowth, micronutrient profiles at the time of diagnosis, the presence of any micronutrient deficiencies, whether replacement was initiated, and if this had an impact on hair regrowth. Who is leading the project: Dr Amr Salam is a Dermatology specialist registrar with an interest in autoimmune hair disorders He was awarded the Deanery prize for the best research project for his programme. He has 19 peer-reviewed international publications, including publications pertaining to hair disorders. Dr Salam will be working with a group of clinical researchers, including Dr David Fenton. Dr Fenton is a consultant Dermatologist and has been running the Hair Research Clinic at St Thomas’s Hospital since 1983. He provides the only dedicated paediatric NHS hair clinic in the UK.
The effectiveness of mindfulness based cognitive group therapy for social anxiety symptoms in people living with alopecia areata: A single case series. (COMPLETED) Expand Alopecia UK funds invested: £9840 When: April 2017 Project type: A single case series. Project Lead: Dr Andrew Thompson Length of project: 16 months (end date extended due to adoption leave) Research Institute: Sheffield University Condition of interest: Those living with AA and clinically significant levels of social anxiety Funds being used for: Research Associate (staff costs), Accredited Mindfulness Based Cognitive Therapy (MBCT) Sessions (e.g. group facilitators & room hire/refreshments), Research team and patient travel expenses, dissemination costs, and trial registration with ISRCTN (clinical trial registry). Research question: The main aim of the proposed study is to provide an initial test of the effectiveness of Mindfulness based cognitive group therapy (MBCT) in reducing clinically significant levels of social anxiety in people living with alopecia areata (AA). The proposed research will also examine whether the intervention impacts on depression, generalised anxiety and quality of life. Justification for research project: Whilst AA has few physical health consequences, it can lead to psychological consequences. A recent study found that 42.4% of respondents reported clinically significant social anxiety symptoms. The prognosis for AA is highly variable leading to frustration and uncertainty for the patient, and health care professionals may feel ‘stuck’ with how to support patients. Currently, there is a lack of psychological support for people with AA, despite the clear need. Mindfulness based cognitive group therapy (MBCT) has been found to be helpful in reducing distress in other conditions, but has not been tested with people with AA. The Hair Loss Priority Setting Partnership identified the need for psychological interventions as a top ten priority for patients and clinicians. The proposed research will provide initial evidence on the effectiveness of MBCT for people with AA who experience social anxiety. The data provided from single case research will give (i) a detailed insight into the process of change which can inform intervention development and (ii) detailed information on the types of difficulties people with AA experience. Who is leading the project: Dr Andrew Thompson will lead the project. Dr Thompson has specialist expertise within psychodermatology and has conducted research in this area for the last 15 years. Dr. Thompson has developed skin specific self-help using randomised control trials and qualitative methods. He will be working alongside a team of people including psychologists, PhD students, therapists and dermatologists. Project Outcomes: This was a small-scale study to see whether there is promise in using MBCT to help reduce social anxiety in individuals with alopecia. Five participants took part in an 8-week MBCT group. All participants found some improvement in social anxiety (as defined by themselves), suggesting MBCT is a useful intervention for some individuals with alopecia. Larger scale studies should be carried out to more thoroughly test the impact of MBCT in individuals with alopecia and social anxiety.
Uncovering microRNA Targets in Scarring Alopecia (COMPLETED) Expand Alopecia UK funds invested: £1000 When: March 2019 - October 2019 Project Type: Data gathering to support hypothesis generation Project Lead: Dr Kehinde Ross Length of Project: 6 months Research Institute: Liverpool John Moores University Conditions of interest: Lichen planopilaris, frontal fibrosing alopecia Funds being used for: completion of next-generation sequencing to determine overall changes in gene outputs in patient skin samples Research Question: Do small gene products of the microRNA family contribute to disease processes? Justification for research project: MicroRNAs are small genetic molecules that have emerged as tractable drug targets for a range of complex diseases, from cancer to heart failure. In order to ensure patients with scarring alopecia can benefit from the potential of microRNA-directed therapies, it is crucial to decipher the microRNA alterations associated with the disease as well as the impact of such changes on inflammation and other biological processes. The data generated will provide novel insights into the underlying mechanisms of scarring alopecia and support larger grant applications for further translational studies designed to benefit patients. Who is leading the project: The study is led by Dr Kehinde Ross, Senior Lecturer in Biochemistry and Cell biology at Liverpool John Moores University. Dr Ross has been studying microRNA expression and function in the skin for over 10 years and is a member of the British Hair and Nail Society, the British Society for Investigative Dermatology and the RNA Society. The project involves collaboration with computational biologists and world leaders in scarring alopecia and hair biology. COMPLETED